Note that Circadian Sleep Disorders Network is not affiliated with any pharmaceutical, medical device, or other company.
Circadian Rhythm Sleep Disorders (CRSDs or CSDs) are neurological disorders in which the sleep-wake cycle is out of sync with the day-night cycle. These include in particular Delayed Sleep Phase Disorder and Non-24-Hour Sleep-Wake Disorder. Also included are Advanced Sleep Phase Disorder, Irregular Sleep Wake Disorder, and Shift Work Disorder, which are defined here.
Delayed Sleep Phase Disorder (DSPD), also called Delayed Sleep Phase Syndrome (DSPS), is characterized by an inability to fall asleep until very late at night, with the resulting need to sleep late in the morning or into the afternoon. Questions? See our DSPS Q&A.
Advanced Sleep Phase Disorder (ASPD), also called Advanced Sleep Phase Syndrome (ASPS), is the opposite. It is characterized by falling asleep very early in the evening, and waking up in the wee hours of early morning, unable to sleep further.
Non-24-Hour Sleep-Wake Disorder (Non-24), also called Free-Running Disorder (FRD), is a condition in which a person's day length is significantly longer than 24 hours, so that sleep times get later each day, cycling around the clock in a matter of days or weeks. Questions? See our Non-24 Q&A.
Some people use the term reverse sleep, referring to the fact that sometimes people with DSPD and Non-24 end up sleeping during daylight and being awake at night.
We are asking our members and followers to give our brochure, and/or our Q&A booklets, to their sleep doctors and their general doctors on their next visits. It is vital to all of us suffering from circadian disorders that more doctors and their support staff understand these disorders and how disruptive they can be. The more doctors who know about us, the more patients we can reach, inform, and support. And the larger our membership, the more credible our voice on behalf of all people with circadian sleep disorders.
You can print out the brochure on US letter paper (8½x11) or on A4 paper (non--US). Booklets can be printed for DSPS or for Non-24 (the same file can be printed on either US or A4 paper). Alternatively you can email us at to request a printed copy of any or all these documents (please specify which). Be sure to include your name and full postal address. We will send these at no charge to you.
June 3-6, 2018
CSD-N board member Lynn McGovern attended the SLEEP 2018 conference in Baltimore June 3 - 6. This is the major sleep conference for sleep researchers in the U.S. Lynn lives in Ireland and is five hours ahead of us. She also has DSPD. However, thanks to the time difference, she was able to attend both morning and afternoon sessions. She focused her attention primarily on talks related to circadian disorders. Lynn has spent considerable time writing up some of these talks, so that those of us who couldn't make the morning sessions can read about the conference and stay up-to-date on the research. https://www.circadiansleepdisorders.org/docs/SLEEP2018.php.
A brief excerpt from Lynn's conclusions: They also talked about the epidemic of sleep deprivation. Yet start times are changing only in schools. It seems nobody is connecting the dots and realising that work start times also need to change. There need to be large policy changes everywhere.
AHRQ, the Agency for Healthcare Research and Quality (within the U.S Dept of Health and Human Services) maintains detailed information on patient registries for use by researchers, as part of its Clinical Trials database. Circadian Sleep Disorders Network's registry and survey has now been added to their database, making it readily available to researchers seeking study subjects. Our entry has been posted. Anyone can search the entire Registry of Patient Registries (RoPR) at https://patientregistry.ahrq.gov.
And if you haven't yet: please REGISTER and TAKE THE SURVEY. The survey results will inform researchers about our situations and experiences, using de-identified data, and the registry allows researchers to request participants to contact them. (Your contact information is not given out unless you respond to their request, which is routed through the survey host, Invitae, using a de-identified ID number.)
We often complain that so little research has been done on the people suffering from Circadian Rhythm Sleep Disorders. One reason is the difficulty researchers have in locating people with these disorders. This is your chance! You can make a difference!
Beth Macdonald (Nina Beth on Facebook), one of the original founders of Circadian Sleep Disorders Network, and who passed away last year, has been recognized in an article in the Journal of Biological Rhythms for her work on the Wikipedia articles on circadian rhythms. Our vice president James Fadden has written a blog post quoting and summarizing relevant portions of the article and with some of the back story. Beth had actively maintained the Wikipedia articles on circadian rhythm, delayed sleep phase syndrome, non-24-hour sleep-wake disorder, and related topics, to be sure that the information was scientifically supported and to eliminate opinions belittling these disorders. James has volunteered to continue this maintenance.
June 21-22, 2018
Susan Plawsky represented the circadian sleep disorders community at the NIH SDRAB (Sleep Disorders Research Advisory Board) on June 21 and 22. The SDRAB was fleshing out the new Sleep Research Plan, and Susan and the other three patient representatives did a great job pushing for greater emphasis on disorders (not just normal sleep) in the plan. You can read Susan's presentation here. CSD-N president Peter Mansbach, vice president James Fadden, and member Alexandra Escalera attended in the audience and spoke up in support. Peter also got the board to support adding information on circadian rhythm sleep disorders to the NIH web pages (that information is still not there).
June 5, 2018
Board Member Lynn McGovern and President Peter Mansbach represented Circadian Sleep Disorders Network at the American Alliance for Healthy Sleep (AAHS) Sleep Advocacy Summit. AAHS is a recently formed offshoot of the American Academy of Sleep Medicine (AASM). This Summit brought together representatives of a number of patient advocacy organizations representing various sleep disorders. Peter gave a five minute introduction to Circadian Sleep Disorders Network, including definitions of our disorders and reference to our patient registry and survey (text, slides).
Lynn is also attending the AASM's annual multi-day SLEEP conference. Since she traveled from Ireland for the conference, her body was still on Ireland time and she was able to be up for morning talks despite her DSPD. She will report on that conference separately later.
June 5, 2018
The American Alliance for Healthy Sleep (AAHS) hosted a Sleep Advocacy Summit on June 5, 2018 during SLEEP 2018 in Baltimore, Maryland. This Summit provided an opportunity for the leadership of sleep advocacy organizations to meet, learn more about each organization, and discuss issues of importance to the entire sleep advocacy community. Thank you to all attendees for your time and participation and our sincere gratitude to all parties that contributed to the planning and success of the Summit.
In attendance at the Summit were 25 attendees from 9 organizations, including:
Each organization presented an introduction to their organization with information regarding current projects, success and challenges the group has faced. This allowed attendees to gain an understanding of each organization's purpose and activities, as well as the populations they serve....
It is clear that all the organizations present at the Summit passionately serve sleep disorders patients, whether individuals with a specific sleep disorder or across the entire spectrum of sleep disorders. While there may be overlap in terms of patients served, all organizations provide valuable, unique programs and services to sleep disorders patients.
Although some issues or needs are disorder specific, the Summit highlighted that increased awareness for sleep disorders, both in general and for each specific sleep disorder, is needed to increase awareness and detection of sleep disorders both with the general public, as well as segments of the medical community, such as primary care physicians. The opportunity exists for the various sleep advocacy organizations to work together to collectively spread greater awareness of sleep disorders.
The General Data Protection Regulations (GDPR) took effect in the European Union, and covers our EU members. We have always repected our members' privacy, and our use of member data has not needed to change. We are clarifying our privacy practices, as required by the GDPR. These practices apply to all our members, not just those in the EU.
Apr 25 -27, 2018
Board member Jennifer Silvia and president Peter Mansbach represented Circadian Sleep Disorders Network at the World Orphan Drug Conference at National Harbor, Washington, DC, on April 25 - 27. "Orphan Drugs" are drugs for rare diseases, which therefore are unlikely to have blockbuster sales and often go looking for a company to sponsor them: hence the "orphan" designation. As the conference title indicates, there were a lot of pharmaceutical companies represented. There is a lot of attention now on soliciting patient involvement in drug development, and we and other patient advocacy groups had been invited to attend.
The most interesting sessions for me (Peter) were the four roundtable discussions I attended. In each one I was able to raise awareness a little by presenting information on our disorders tailored to each particular topic. Being a rare disease conference, our concerns were well received. For example, one discussion was Best Practices and Tips...to Tell a Rare Disease Story, and I emphasized the difficulty we have in getting an audience even to believe that we really can't fall asleep at a desired time no matter how tired we feel. For the Integrating the Patient Perspective I brought up how treatments have been based on lab measurements of melatonin onset, but we were more concerned with how tired we feel and how well we can function.
I attended a number of talks of interest. One was about patient registries for drug development. Among other things, these are useful for indicating the variability in people's experience with a particular disorder, and learning what endpoints (treatment goals) are important to the patients. [Aside: if you haven't yet, please join our registry and take the survey, to help jump-start research on Circadian Rhythm Sleep Disorders.]
One participant at the roundtable on real-world data used the term "free-range humans" to describe participants in a patient registry, because their answers may not hew to rigorous definitions of diseases or symptoms. I think I persuaded him of the value of registries like ours, to collect real-world patient data and to stimulate further research. I had a lot of support on this point from other participants.
I was again aware of how many of the activists in other patient advocacy groups are the parents of patients, since the patients themselves often don't have enough energy to pursue awareness and advocacy in addition to just surviving. With circadian disorders, we still often have difficulty persuading our parents that our disorders are real and serious, so we haven't seen enough such support.
Possibly the most useful interaction for me at the conference was a long discussion I had with a woman who works for Montgomery County, MD (where I live) helping small businesses. We discussed some of the issues that Circadian Sleep Disorders Network faces. She said she will refer me to a non-profit organization that helps other non-profits start and grow. This will be a long-term project.
Our registry and survey is hosted by a health company that assures its privacy and security, and guarantees that it meets HIPAA (Health Information Portability and Accountability Act [U.S.]) requirements. This company was originally called PatientCrossroads, then changed its name to AltaVoice. Last year AltaVoice was bought by Invitae. Now they have switched the branding of the registry and survey to Invitae.
Your old links should continue to work. Our own website links have been redirected to the new site at invitae.com. Any previous survey answers have been carried over to the new site. Your login should continue to work. Let us know (at ) if you encounter any problems.
And if you haven't yet: please Take the Survey!
The (US) National Institutes of Health (NIH) is launching an unprecedented study, called All of Us, that will attempt to enroll a whopping one million participants from across the country. The goals:
The NIH wants input from all of us: which research questions should this vast study help answer? This is where we owls come in! We want more research on what makes our body clocks tick to the beat of a different drummer—and how to reset our clocks. We can also study sleep hours and habits, both for connections with other disorders and illnesses, and to attempt to get a handle on the incidence of CRDs.
Submit your research idea/s here: https://allofusresearchpriorities.ideascale.com/?new-idea=1
More info here:
CSD-N's Board of Directors held elections for officers to serve for the next two years (through Jan 2020). The previous officers all agreed to run again, and no new people were nominated. The officers are:
This is a free mailing list support group for people with DSPS and Non-24 to share their experiences. It's a good place for people just discovering these disorders to hear how others deal with them, as well as for long-time participants to get support and to provide support to others. There are often discussions of evolving treatment, useful to all. For further information, and to sign up, go to www.circadiandisorders.org/list.
Note that membership in Circadian Sleep Disorders Network and membership on this email list are completely separate.
Circadian Sleep Disorders Network is affiliated with this email list, and our volunteers assist the list administrator with some chores. CSD-N was formed by participants on this list, and many of our members post regularly. But we have no control over what appears or who can join, and list membership is completely separate from membership in CSD-N.
Once you've signed up for the list, you post by sending an email to Everyone on the mailing list receives that post as an email, and you receive everyone else's posts as emails. If you don't like to get separate emails, you can opt to receive in digest form, typically one email a day containing all the day's posts. You make that selection (after signing up) by logging in at www.circadiandisorders.org/list.
There are some rules:
The rules that the list software enforces are
An additional rule is PLEASE do not just reply to a message with a subject line containing "Niteowl Digest, Vol xxx, Issue xxx". That is obviously not informative and if you aren't careful you may include the whole list of messages in the Digest, making your message too large for the list.
Digest or not, it is a good idea to trim whatever you are replying to leaving just enough for people to know what you are replying to.
Of course, don't be snippy or insulting, and please take off-topic conversations off-list. And no advertising.
Once you've signed up for the list, you can also browse previous posts in the archive at
There is also a mirror of the archive on Yahoo at https://groups.yahoo.com/neo/groups/nite-owl/info. This is useful when the primary archives are not working, as sometimes happens. Login to your Yahoo account, or create one (free) - link is at the top right on that page. Then you have to Join the Yahoo copy of the list - this is separate from signing up for the list itself - there is a button on the Yahoo page to do this.
To unsubscribe from the Niteowl email list go to
and follow the directions at the bottom of the page. You will need to know your list password.
If you do not know your list password, send email to
with PASSWORD in the subject line. This email must come from the same email address that you subscribed from (which is the one your incoming Niteowl list emails go to). Your password will be sent to you at that address.
If that doesn't work, you can unsubscribe by sending email to
with UNSUBSCRIBE in the subject line. This email must come from the same email address that you subscribed from (which is the one you your incoming Niteowl list emails go to). If you do this, you will get an email back asking you to confirm. You must follow the instructions and confirm, or you will not be unsubscribed.
For more (or more current) help on list commands, send email to
with HELP in the subject line.
Our brochure is geared to the general public, to introduce DSPD (DSPS) and Non-24 to people experiencing symptoms of these disorders, and to their families.
Please distribute it to anyone who may be interested.
Print on lightly colored paper for some color, if you like. We used ivory.
|Brochure - web display||
Print on US letter size paper, PDF
Print on A4 size paper, PDF
The web display version shows the brochure panels in easy-to-read order. The print versions are meant to be printed out on both sides of a sheet of paper, then folded in thirds, creating a brochure. (In the print version, the panels will appear out of order on-screen.)
We have posted documents describing DSPD (DSPS) and Non-24, in an easy to read Question-and-Answer format. These are designed to give to family members, friends, employers, and school personnel, to help them understand these disorders. Feel free to print and distribute these. There are two different (but similar) versions, one for DSPS and the other for Non-24:
|DSPD Q&A - web||printer||booklet*|
|Non-24 Q&A - web||printer||booklet*|
The web formats display nicely in your browser.
The printer versions are formatted by your browser for printing a multi-page document.
The booklet forms are pre-formatted PDF files that you can print on two sides of a single sheet of paper, which then folds in half into a booklet.
* When printing the booklet, be sure to flip on the short edge (select this option if you have a double-sided printer).
|Spanish:||DSPS Preguntas y Respuestas - web||printer|
|No-24 Preguntas y Respuestas - web||printer|
|German:||DSPS F&A - web||printer|
|Non-24 F&A - web||printer|
We also have a one page Basic Fact Sheet that introduces DSPD and Non-24 to people who don't know about them. It's a quick and easy read, just the basics.
Former board member and artist Lily Style has created an infographic describing Circadian Rhythm Sleep Disorders. View it in your browser at www.circadiansleepdisorders.org/docs/CRSDGraphic.php. Feel free to repost the graphic to help raise awareness.
You can print it directly from your browser (we suggest making the browser window full screen - the image will resize). We are also posting JPG images in various proportions for printing directly on different sizes of paper:
We are offering merchandise (mugs, T-shirts, tote bags, bumper stickers, and a messenger bag) with our name and logo through CafePress,
www.cafepress.com/circadiansleepdisordersnetwork. (Note: if you just search CafePress you will find this merchandise, but at a higher price!)
Circadian Sleep Disorders Network is a Coalition Partner of Start School Later. We understand only too well the difficulties many teens have with early school start time, and we support the move to start school later.
smile.amazon.com you will be asked to confirm Circadian Sleep Disorders Network as your charity. Amazon will remember your selection. But you do have to go to smile.amazon.com instead of simply amazon.com, for each purchase, if you want 0.5% of that purchase to go to CSD-N. Note that you pay the same amount either way - through Smile the 0.5% goes to us, otherwise it goes to Amazon.
We have already received several contribution checks from Amazon! Please select Circadian Sleep Disorders Network as your charity. smile.amazon.com
Amazon and the Amazon logo and AmazonSmile and the AmazonSmile logo are trademarks of Amazon.com, Inc. or its affiliates.
This is a list of refences added to our Info page since the last newsletter. The newsletter lists references added since the previous newsletter. These are generally available to members only.
This web site is intended to provide generic information about CSDs, and
is not intended to replace discussions with a healthcare provider.
You should not use the information on this website for diagnosing or treating a medical or health condition.
All decisions regarding patient care should be made with your healthcare provider.
Office: 4619 Woodfield Rd, Bethesda, MD 20814
Phone: By appointment only, please.
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